no, they deserve—
some answers to the questions
they are coming up with.
And it’s not the first time
I’ve heard them. I just haven’t
said anything.”
Mom immediately starts crying
and Dad jumps up to pace.
It’s now clear they are divided
on this issue, and it’s not the first time
they’ve had this discussion.
Dad confirms my observations
and spells it out.
Mom wants to tell them at least something
about what they are facing
and Dad does not.
I can see both sides
and I can see I clearly don’t have a vote
in this issue.
Worst of all
I can see that the climate is not favorable
for any kind of discussion
about my fundraising ideas,
not now,
maybe not ever.
I’m the one close to tears
as the meeting comes to an abrupt end.
I trudge upstairs
dragging my rock of celebration
by a string.
AFTERTHOUGHT
Oh, and BTW
Dad, Mom,
you’ll be glad to know
I’m really dealing with the music
just like you wanted me to:
recital,
summer camp,
the scholarship;
all forging ahead.
You remember…
That contest I entered
in a previous life?
LATE NIGHT MESSAGE
I need to talk to someone.
I start a text to Juan:
delete.
I start a text to Mia:
delete.
Like a really stupid rat
in an uncomplicated maze,
I go back and forth
with a string of attempts
to communicate with
the two people I know the best.
I hit a dead end every time.
I toss my phone on the bed
thinking about crawling in and putting
an end to this day that had such promise,
but just so I can get the urge to talk
out of my system
I email Wendy from BDSRA.
I ask her
how her family handled
the issue of telling her siblings
the truth, or at least some of the truth.
I realize as I click away
how good it feels to have this connection
with someone who really
understands what’s going on in my life.
I wonder if I’ll get to that point
with old friends
like Mia and Juan?
I jump as a message comes in.
My heart takes off in triple time
when I see it’s not Wendy.
It’s Juan.
APOLOGIES
Breathe. Breathe.
Hey.
So I hit a tree today
on the slopes…
Gasp.
OMG, are you OK?
In the hospital? What happened?
Nothing broken.
Just my pride lol.
I can’t stop thinking about you, Claire.
The tree and the leaves, remember?
They go together. Kwim?
I miss you.
Miss talking with you.
Lots of time to think
on the slopes.
I’ve been an ass, and I’m sorry. Smh
When I uncurled myself from that tree
I thought about how stuff like pride
rules our lives sometimes,
kwim?
I’m sorry too. I’m the one who screwed up.
I didn’t think about anyone’s feelings but my own
when it all happened so fast.
Lots to tell you
when you get back.
Good stuff.
Awesome. Coming home early on Friday.
Bad luck to try Schmoozies
a third time?
I’m game.
Supposed to be a charm, right?
Yeah. Third time. Schmoozies. Cya at 4.
THE FEATHER NAMED PRIDE
If not for my clock that says 3:00 a.m.
I would be tempted
to fling open the window
and shout love with a capital ‘J’
into the cold, starry night.
Third time’s a charm.
Third time’s a charm.
I settle for snuggling under my downy quilt
to think about Schmoozies on Friday
and feathers,
especially one named pride
that was unleashed in my room tonight.
I picture it floating out my window
into the stratosphere,
gone, at least for now.
And across the room
on a shelf sits a rock
pulling me towards
a whole new interpretation
of the word celebrate:
life left to live
with Davy and Trent
and
friendship with Juan.
HOPING FOR THE BEST
Half looking for a follow-up email
from Juan, I check it first thing
in the morning.
There is one that quickens my breath
but it’s from Wendy, not Juan.
“My parents told Brenda and Jackson
what they are up against
before we went to the conference.
Not that they are going to die early
but that they aren’t going to ever get better.
It was a mixed bag. Brenda had a million
questions and seemed to understand
better than Jackson. She talks about it
more than he does. It opened up lots of questions
but also made us closer as a family
in some ways. It was like we could all talk
more freely and didn’t have to worry
about keeping things a secret.
But sometimes I think Brenda
might be better off not knowing.
She dwells on it too much,
and I think it brings her down.
The things she says and questions she asks
rip me up sometimes.
It’s a tough call and everyone is different.
I’ll hope for the best
for you and your brothers.”
The best?
All I can think of is
the beast.
NOT NOW, SAYS THE VOICE
I read and reread the email.
dwells on it too much…brings her down…
questions rip me up
or possibly
closer as a family…didn’t have to worry
about keeping things a secret…talk more freely
I think about the energy we—
Mom, Dad, and I—
waste keeping the secret,
playing the “everything is peachy” game.
I know what I need to do.
The boys will be buzzing around at breakfast
but I need to talk to Dad,
get this off my chest.
He hides behind the paper this morning,
and I don’t pay much attention
to the voice inside that says
“not now.”
“Hey Dad, can we talk?”
He looks over the top of the paper
his voice not matching the cool stare.
“Sure, fire away.”
I look directly at Davy and Trent,
tossing down breakfast but listening.
“I mean privately.”
Mom stops puttering at the sink
as if she can feel the heat rising.
/>
“I don’t think we need to continue
the conversation, Claire.” His words measured
and bristly as the paper he rattles.
“But I do.”
“Will you two please take it into the den
and, uh, close the door?”
Mom’s chirpy voice interrupts as she tilts her head
towards the boys.
Dad glares at her,
slams the paper down,
and heads for the den
without a word.
Proves my point, I think.
I follow him out of the room,
aware the whole episode
is blaring into the excellent ears
of my brothers.
HARD DECISION
Dad slumps into his favorite chair
more like the end of a long day
than early Saturday morning on a
holiday week.
“Why, Claire?
Give me your argument for telling
Davy and Trent how much
suffering they have to look
forward to. Tell me how
that would help.”
I study his stern face,
hear the edge and the pain in his voice,
and wonder
what happened to the father who said just a month ago,
“We have lots of celebrating to do
when we get home.”
“They’re asking questions, Dad,
lots of questions,
I know you’ve heard them.
The seizures…the blindness…why Davy
is different from other kids
and who knows what will happen
when the whole nightmare
really begins to hit Trent.
Just the other day
he asked me
if I was going blind, too.
I didn’t know what to say.
I’m tired of making up lies
and keeping it all secret
or trying to remember what I can
or cannot tell them.
It’s not fair to them
or me, frankly.
It’s just too hard.”
Dad gets up and stands at the window
with his back to me for a long while
before turning back around.
“Hard.”
long pause
“How I wish to God
I could make it all easy
for you, Claire…
for all of us.
But I can’t,
and for now
my decision stands.
Send them to me if they ask you
any more questions.”
I know my cheeks are flushed,
and the tone of my voice is rude,
and my mother would call me on it
if she were here,
but I am finished caring.
“Sure, Dad. I sure will do that.”
He watches me storm out without a word.
LIKE SALVE ON OPEN WOUNDS
I’m not sure which is more nerve-rattling,
my early morning convo with Dad
or the one coming up with Juan.
I try to put any expectations out of my mind,
but “third time’s a charm” plays in my head
like the repetition of a broken record.
He settles into the booth
across from me
again.
I sense his warm presence
and connect with his smiling eyes.
It feels like salve on open wounds.
“So hey, let’s try something different.
No music talk for now anyway.
Agreed?”
“Agreed!” The word escapes in
a gush of relief.
“So tell me about this conference.
It seems our recent conversations have
been uh,
in…ter…rup…ted
before you get to it.
Obviously it was awesome.”
I gush some more
and get even gushier as I tell him about
all the hope and positive vibes
in the midst of so much sadness.
Too bad Dad has lost it
but I won’t let that thought
bring me down right now.
“So, I want to be able to do
something. I know there isn’t a cure,
won’t be a cure for my brothers,
but if I could do something—
maybe raise some money to give
to one of the research foundations;
have some car washes;
sell some donuts;
you know, just something
to help, I would feel better.
“That’s so cool, Claire, and
how are my buddies doing?”
“Sometimes I think they are doing better
than we are—
Mom and Dad and I—
but you don’t need
to hear all that.”
“I’m here if you want to unload.”
“It’s just that, well, Dad has huge
issues at work, you know, they’re
putting pressure on him to expand the program
with less money, and that puts more burden
on my mom.
Things that were once minor adjustments
are now major traumas.
And the disease, Juan.
The disease marches on unpredictably
in both boys,
sometimes bringing irreversible changes
for the worse
right before our eyes.”
Juan reaches for my hand
across the table.
“Count me in on the car washes
or whatever. Let me know how
I can help.”
This is the Juan I’ve always known.
I swallow the lump in my throat.
“Thanks, Juan, for being there.
For listening,
for putting up with me.”
There is a long pause
and then, “Sure, Claire.
I never stopped wanting
to be part of your life.”
This time we leave the booth
at the same time.
I wonder
what law of the universe
allows you to end up on your feet
after your world turns upside down
and you’ve lost count of how
long you’ve been
in a dizzying tail-spin.
CHRISTMAS DAY
Christmas surprises me.
The grey shroud of sadness, exhaustion
uncertainty and dread
of the past months
and the tension between Dad and me,
and Dad and Mom,
lifts like fog in the face of sun.
Everyone, especially Dad, is
determined to be festive.
The day rolls along
full of laughter, holiday music
and an overload of good food.
Mom’s smile is big
and she tries to hide the tears,
joy tears,
that slip out during the day
as Davy and Trent take to
the gifts we so carefully chose for them.
The game, ‘Bop It’ is a winner
and for most of the day Nintendo sounds
are replaced by recorded commands:
twist it,
snap it,
turn it,
and shouts of glee as they vie
to one-up each other.
I remember other Christmases
when noise-making toys
tested everyone’s nerves
by the end of the high-pitched day.
I can tell by the looks on their faces
Mom and Dad are soaking it in,
savoring it,
hanging on
/> to every sight and sound
for dear
life.
ENERGIZED
I wake up the day after Christmas
energized, thankful
that the holiday felt almost like
the “old normal”
and yes,
that Juan and I are
what…
maybe into our own
new normal?
I’m thankful for no guilt
when Mom and Dad
take the boys to Monkey Joe’s
and don’t seem bothered
that I want to stay home.
“I know you need to get some practice in,”
Mom says, and I flinch
when I realize how far down the list
of priorities
the recital
is.
But as soon as they leave
I put in some serious piano time
with “The Kite”
feeling reassured that I have it nailed
and then let my fingers drift
to Pete Seeger melodies
while pictures of car washes,
donut sales,
and Juan
float around in my head.
I think about how my friends
helped me through those first days
when we got Davy’s news, then Trent’s
and now,
Juan’s sincere intent
to help
in a new direction.
I hop off the piano bench,
composing an email
as I head for the computer,
then I grab my phone.
Better check with him
Behind These Hands Page 15
